The antivaccine movement resurrects the zombie that is the “autism epidemic” (2014 edition)

As I just mentioned a week ago, there used to be a time when I dreaded Autism Awareness Month, which begins tomorrow. The reason was simple. Several years ago to perhaps as recently as three years ago, I could always count on a flurry of stories about autism towards the end of March and the beginning of April about autism. That in and of itself isn’t bad. Sometimes the stories were actually informative and useful. However, in variably there would be a flurry of truly aggravating stories in which the reporter, either through laziness, lack of ideas, or the desire to add some spice and controversy to his story, would cover the “vaccine angle.” Invariably, the reporter would either fall for the “false balance” fallacy, in which advocates of antivaccine pseudoscience like Barbara Loe Fisher, Jenny McCarthy, J. B. Handley, Dr. Jay Gordon, and others would be interviewed in the same story as though they expressed a viewpoint that was equally valid as that of real scientists like Paul Offit, representatives of the CDC, and the like. Even if the view that there is no good evidence that vaccines are associated with an increased risk of autism were forcefully expressed, the impression left behind would be that there was actually a scientific debate when there is not. Sometimes, antivaccine-sympathetic reporters would simply write antivaccine stories.

So in general, April was a lousy time for anyone who could think critically about autism and/or vaccines, but a good time for blog fodder well suited to a bit of “Insolence.” All good things come with a price, I guess.

I could also count on the antivaccine movement to go out of its way to try to implicate vaccines as a cause of the “autism” epidemic, taking advantage of the increased media interest that exists every year around this time. Examples abound, such as five years ago when Generation Rescue issued its misinformation-laden “Fourteen Studies” website, to be followed by a propaganda tour by Jenny McCarthy and her then-boyfriend Jim Carrey visiting various media outlets to promote the antivaccine message. Sometimes Fire Marshall Bill would produce antivaccine editorials so brain meltingly dumb that it’s hard to believe someone with two neurons to rub together could have produced them.
Fortunately, over the last three or four years, the media have become noticeably—and appropriately—much more dismissive of antivaccine pseudoscience. This seems to have occurred in the wake of Andrew Wakefield’s humiliation at being struck off (i.e., had his medical license revoked) in the U.K. and then having his infamous 1998 case series that started the fear mongering over a nonexistent link between the MMR vaccine and autism retracted by The Lancet based on evidence that he committed scientific fraud.

The antivaccine movement aside, there remains a temptation among scientists and government agencies to release the results of new studies having anything to do with autism either during the last week of March or the first week of April, all, of course, to take advantage of the publicity of Autism Awareness Month. So it was last week, when beginning on Thursday I sensed a disturbance in the antivaccine crankosphere force, with the antivaccine blog Age of Autism rerunningvariousposts by Mark “Not A Doctor, Not A Scientist” Blaxill and other AoA denizens from 2009. The reasons were obvious. The CDC was going to release the latest autism prevalence data on Thursday. The antivaccine crankosphere has been busily spinning those numbers since Thursday, which means it’s time to address those numbers here. I had planned on doing it Friday, but then Dr. Bob Sears had to go and lay a major turd of whininess upon Facebook, necessitating a heapin’ helpin’ of Insolence. Never let it be said, though, that I don’t come back to important topics, even after being distracted like Dug the Dog.

To obtain as complete a count as possible of the number of children with ASD in multiple surveillance areas.

To report comparable population-based ASD prevalence estimates from different sites every 2 years and to evaluate how these estimates are changing over time. To study whether autism is more common among some groups of children than among others.

To provide descriptive data on the population of children with ASD.

The concept is simple; unfortunately the implementation is not. The report describes how surveillance is conducted at ADDM sites:

ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder–not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described.

Why did the investigators choose age 8 as the benchmark, the age at which they would examine prevalence? As is explained later in the report, it’s because the baseline ASD prevalence study conducted by the CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) in 2003 demonstrated that this is the age of peak prevalence. How can that be? The authors of that study speculated that it was possible at the time that the lower rates in 9- and 10-year olds might have reflected the use of narrower diagnostic criteria for autism before the DSM-IV and the increased availability of educational and health services for children with autism in the 1990s. More specifically, prevalence rates in that study between the ages of 5 and 8 didn’t significantly vary from each other; so the investigators chose the oldest age in that range, in order to capture the highest prevalence rate. To that, I also wonder whether, as I pointed out multiple times before, the observation that some children lose their ASD diagnosis as they grow and develop had anything to do with it. Be that as it may, this is the system, and that’s how the estimates come about.

Last time the CDC reported these numbers, which was in 2012, they found that autism prevalence was 1 in 88. The antivaccine movement went wild. This time, in 2014, the CDC estimates that 14.7 per 1,000 eight year olds (1 in 68) have a diagnosis of an ASD. As Autism-News-Beat points out, this new estimate is 30% higher than the estimate from 2012. (It should be noted that this prevalence number comes from 2010 data.) It’s hard not to mention at this point that it’s very hard to blame this increase on vaccines given the stability of vaccination rates overall in the US. Let’s just put it this way: The increase in prevalence numbers is not a compelling piece of evidence that vaccines are the cause of an “autism epidemic,” no matter how much antivaccinationists try to convince you otherwise.

So what could be going on?

Making sense of the numbers becomes easier if you start looking at more than just the overall number of 1 in 68, or even the estimate that 1 in 42 boys and one in 189 girls living in ADDM Network communities were identified as having ASD in 2010. After all, we’ve known for a long time that boys are considerably more likely to be diagnosed with an ASD than are girls, and these numbers confirm that. So let’s look at more of the details:

Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71–85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity.

Next, if you look at Table 2 in the CDC report, you’ll find a huge variation in the prevalence reported, ranging from 5.7 per 1,000 in Alabama (1 in 175) to 21.9 per 1,000 in New Jersey (1 in 46). Here are the data summarized in a graph:

I noticed something about this graph immediately. Look at the colors of the data points. either dark or light. The dark-colored points represent sites that relied primarily on data from healthcare sources, while the light-colored points represent sources that had access to educational records throughout all or most of their surveillance area? Why is that important? Simple: Notice how all the sites that only relied on data from healthcare sources (Alabama, Wisconsin, Colorado, and Missouri) report prevalence rates below the prevalence rate for all the sites combined. Only one (Missouri) had error bars that encompassed the overall prevalence rate for the entire ADDM Network. Now notice that the sites that had access to educational records (Georgia, Arkansas, Arizona, Maryland, North Carolina, Utah, and New Jersey) all reported prevalence rates that were either at or above the overall prevalence for the network. To me this is a red flag that at least some of the variability in the autism prevalence numbers has to do with the intensity of surveillance and the intensity of screening in various states. Frequently, this is mischaracterized dismissively by antivaccinationists as a huge straw man they like to call “increased awareness,” but in reality it’s a lot more than that, as I’ll discuss later. In the meantime, let’s move on.

Another red flag indicating that much of what is driving the changes in autism prevalence numbers is likely to be something other than biology is the wide disparity between autism prevalence as diagnosed in non-Hispanic Caucasians and in African-Americans as apposed to the much lower prevalence as diagnosed in Hispanics. Indeed, non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. This sort of disparity is far more likely to be due to differences in screening and diagnoses than to biology. Now couple this with observations in the report regarding ASD diagnoses as related to diagnoses of intellectual disability. The authors noted that in previous reports, from 2002 to 2008, the greatest increases in ASD prevalence were noted in Hispanic children, non-Hispanic black children, and children without co-occurring intellectual disability. The first two suggest that Hispanic and non-Hispanic black children are likely to be “catching up” with Caucasian children in terms of access to diagnostic services, while the increases in children without intellectual disability is interpreted thusly:

The much higher prevalence of ASD without co-occurring intellectual disability among white children appears to explain much of the variation in ASD prevalence estimates between different racial/ethnic groups. Among white children, the prevalence of ASD without intellectual disability was nearly double the prevalence among either black children or Hispanic children (OR = 1.8, p<0.01 for both comparisons). Conversely, the prevalence of ASD with co-occurring intellectual disability was similar among white children and Hispanic children but significantly higher among black children than among both of these groups. This suggests that in these seven sites, the significant white-to-black and white-to-Hispanic prevalence ratios were primarily driven by higher prevalence of ASD without intellectual disability among white children, and the significant black-to-Hispanic prevalence ratio was primarily driven by higher prevalence of ASD with co-occurring intellectual disability among black children.

In other words, more children without intellectual disability are being diagnosed with ASD. In the past, these children likely would not have been diagnosed with ASD—or with anything at all. Now they are being diagnosed. As Emily Willingham put it:

From the data, it looks like a lot of sociocultural factors enter into the values. Given the huge variability from site to site and the ethnic differences, recognition and service availability are probably factors. Dr. Boyle referred repeatedly to the evolution of our understanding of autism and used the large percentage of children included in these values who have average to above-average intelligence as an example of that. Unlike numbers from a decade ago, these values include children who previously might not have been recognized as autistic.

For one thing, the prevalence seems to vary in different communities and among children of different races. The CDC found white children are far more likely to be identified with autism, even though scientists don’t believe the rates are truly different between whites, Hispanics or blacks.

That means that the discrepancy lies in the diagnosis and services available in different communities.

This is very likely true. As was pointed out in the analysis posted at the Thinking Person’s Guide to Autism, Richard Grinker studied ASD prevalence rates in South Korea and estimated that 1 in 38 children had ASDs there. In a news report about the study, Grinker pointed out that the reason the rates he found were so high was likely because in-person evaluations were performed for any child suspected of having an ASD and two-thirds of the cases of ASD identified in the study were “in mainstream schools, unrecognized, untreated.” If the estimates in the South Korean study are more accurate, prevalence rates for ASDs, which are clearly still underdiagnosed, can be expected to continue to increase for some time, until they finally level off at somewhere approximating the “true” prevalence rate. The study’s message, according to autism researcher Bennett Leventhal, is that “if you really go look carefully among all children everywhere, you find that things are far more common than you previously expected.” This is true not just of ASDs, but of pretty much every medical condition that has ever been screened for. If you don’t look for it, you won’t find it. If you do, you will, often at a much higher rate than you would ever have guessed.

I like to go back to an example I use time and time again. I use it time and time again because it’s about as good an example as I can find. Antivaccinationists like to use the argument that increased diagnosis and screening alone can’t explain such a large increase in a “genetic” disease. Thus, to them, autism can’t possibly be due to a genetic condition. Rather, it must be due to “environment”—cough, cough, vaccines, coughcough. However, as I believe to be worth repeating, they are quite wrong in the premise behind their argument. I’m referring to the example of ductal carcinoma in situ (DCIS), a premalignant precursor of breast cancer, whose incidence has risen at least 16-fold since the 1970s, almost all because of the introduction of mammographic screening.

Another example is hypertension. Before the 1920s doctors didn’t routinely measure systolic/diastolic blood pressure ratios; so there were few, if any, cases of hypertension because doctors weren’t looking for it and didn’t know how to easily measure it. Even over the last decade, prevalence of hypertension has increased (for instance, in Canada). Perhaps a better marker for hypertension diagnoses is the percentage of adults who have been prescribed antihypertensive medications, which has skyrocketed since 1950. Of course, over that time, the definition of what constituted “hypertension” has changed markedly, to lower and lower diastolic and systolic pressures. Amusingly, various denialists lambaste such broadening of diagnostic criteria to claim that hypertension is an “engineered” epidemic, while denialists of another stripe (antivaccinationists) take advantage of the broadening of the diagnostic criteria for autism/ASDs in the 1990s to link the entirely predictable increase in ASD prevalence to their favorite bogeyman, vaccines.

Once again, definitions of medical conditions matter. They can have a huge influence on prevalence rates observed. Moreover, if you don’t look for something, you won’t find it, and if you do look for something, you will find a lot more of it than you expected. It is quite possible that that is what’s happening with autism, but such a narrative doesn’t fit into the vaccine-autism idea. The antivaccine movement needs an increasing apparent autism prevalence.

The antivaccine movement reacts

Predictably, based on the intense “preparation” by blogs like AoA, I wasn’t surprised to see that the antivaccine movement was ready to pull out the same sorts of histrionic reactions to this CDC report as it did to the CDC report two years ago. Predictably, SafeMinds denied that, well, I’ll let SafeMinds say it:

Katie Weisman of SafeMinds stated, “Broader criteria and awareness cannot account for this magnitude of increase. The federal government continues to spend millions of dollars ineffectively and ‘potentially duplicatively’ according to a recent GAO report. We need to identify environmental triggers for autism, prevent them, and develop effective treatments.”

Never forget that in anti-vaccine-speak, “environmental triggers” is a code word for vaccines. Weisman is also attacking a straw man, which is the straw man I alluded to earlier. The issue goes far beyond “broader criteria and awareness.” It involves both broader criteria and intensity of screening for developmental disorders, including ASDs. “Awareness” is too vague a term. Specifically, what likely accounts for the increased prevalence of ASDs includes a combination of broader diagnostic criteria, diagnostic substitution (i.e., conditions that formerly weren’t diagnosed as ASDs now fall under the the diagnosis of an ASD), and increased screening and concomitant availability of services.

If you don’t believe me when I say that “environmental triggers” is a code term for “vaccines,” just take a look at SafeMinds’ followup, Top Ten Things to Know about the CDC Report on Autism Prevalence. It’s a mix of self-reported weaknesses of the CDC report, such as the point that the ADDM sites were not selected to be representative of the US population and that ADDM sites change over time, making direct comparisons over time problematic. Of course, one can’t help but note that SafeMinds has no trouble assuming that the comparison between 2012 and 2014 (or 2010 and 2014) is perfectly valid, that autism prevalence really has increased 30% over two years, and that the difference couldn’t possibly be influenced by differences in ADDM sites. In any case, here come the antivaccine points:

Inaccurate Information Regarding Thimerosal Exposure: Thimerosal was not completely removed from vaccines in 2002. The concerns regarding the use of mercury (thimerosal) in infant vaccines surfaced in July of 1999 and it took several years for manufactures to alter their production process to remove or reduce thimerosal content. Vaccines that were being made during these transition years that contained thimerosal continued to be released with 2 year expiration dates, which means children in this report were still receiving thimerosal containing vaccines. Infants in high risk categories were also recommended to receive flu vaccines with mercury starting at 6 months of age and annually thereafter. In addition, the CDC Advisory Committee for Immunization Practices recommends that all pregnant women receive flu vaccines during pregnancy of which the vast majority contained mercury. The fetus accumulates mercury at higher levels than the mother and exposure to mercury during pregnancy is documented to cause neurological harm. Therefore it is impossible to report that there is no association between mercury in vaccines and autism prevalence.

The problem, of course, is that this study never said anything at all about thimerosal and autism. That’s not what it was designed to do. We have plenty of other studies that did look at that question to tell us that thimerosal in vaccines is not associated with autism. Nice straw man, though.

Of course, if it’s not thimerosal in vaccines, it must be the vaccines themselves, right? At least, so sayeth SafeMinds:

Given that the ADDM researchers had access to medical records, a valuable opportunity to evaluate immunizations, adverse reactions, and the development of autism has been ignored. We have had two decades of lost opportunities, which shows no sign of changing. The paper states,” Other topics of interest focus on socioeconomic indicators as well as perinatal risk factors such as timing of conception, weight gain during pregnancy, parental age, and interpregnancy interval.” The CDC failed to mention the many other factors which studies are showing increases autism risk, including air pollution, pesticides, proximity to toxic release sites, and medications such as acetaminophen and anti-depressants. While the CDC/HHS continue to tell the public that there is no link between vaccine injury (and exposure to mercury) and the onset of autism, a study conducted by EBCALA[3] and published in the peer-reviewed Pace Law Review confirmed that the government has compensated at least 83 families in the Vaccine Injury Compensation Program whose child suffered a vaccine induced brain injury resulting in the onset of autism.

In other words, SafeMinds is criticizing the CDC for not examining the hypothesis that they want the CDC to examine, a hypothesis that has been thoroughly discredited, citing a highly dubious “study” by a lawyer about legal claims whose conclusions were easily refuted and which was unethically carried out without institutional review board approval.

Meanwhile, AoA ramped up the nonsense with a series of truly brain dead Facebook memes. Arguably the dumbest of them all is one in which superimposed over a picture of a highly disgusted looking older doctor is this one:

The stupid, it burns with a thermonuclear flare. Or maybe like one of those supernovas on Cosmos. Either way, it burns.

To this, I reply, using my own specialty as an example: How could doctors in the 1970s have missed so many cases of DCIS? How could doctors in the 1950s have thought that the best treatment for breast cancer was a radical mastectomy? How could doctors in the 1960s not have realized how useful chemotherapy was for certain cancers? Medical science advances. The way I treat breast cancer now is actually significantly different than what I did 15 years ago, and how I treat it as my career is near to winding up in 15 years will likely be significantly different from how I do it now. The same is increasingly true of how it is diagnosed and characterized, given the rapid development of molecular medicine techniques being used to characterize tumors. Compared to 15 years ago when they did, today most women don’t have all the lymph nodes under their arms removed. Lots of them have chemotherapy first instead of after surgery. We do fewer mastectomies. There are new, targeted therapies. We can predict better who does and doesn’t need chemotherapy. For instance, as recently as ten years ago, a lot of women with node-negative estrogen receptor-positive cancers got chemotherapy based solely on the size of their tumors. Now, thanks to a 21-gene assay, we can much more accurately separate the women with such tumors not likely to benefit from chemotherapy from those who are and treat each accordingly.

My god, man! Those oncologists ten years ago must have been a bunch of idiots to have subjected so many women so unlikely to benefit to such toxic chemotherapy!

See what I’m getting at?

It has nothing to do with pediatricians from 20 years ago being “a bunch of idiots.” It’s just that our understanding of autism and ASDs has improved and evolved, as is the case with many medical conditions. Lots of what I learned in medical school 26 years ago is now obsolete. Lots of what I learned in residency 18 years ago is obsolete. Lots of what I learned in fellowship 15 years ago is now obsolete. Medical science advances and evolves, and physicians have to be continually learning to evolve with it.

Contrary to the hysteria over the numbers coming from the antivaccine crowd and, I should add, the rather clueless reporting that I’ve seen that stops at mentioning the 30% increase in ASD prevalence over two years and doesn’t delve into the nuances, these numbers do not represent a crisis. They do not represent evidence in support of a link between vaccines in autism. They don’t even really suggest a link between environment and autism. That’s not what this study was intended to do. What they do mean is that medicine is getting better at defining what autism is and diagnosing it and that there is still a ways to go, particularly in underserved communities and among underserved minorities. That’s why I agree with Shannon Des Roches Rosa. It’s time to keep calm and think critically, something antivaccinationists are unable to do as they make ridiculous charges and demand that “autism epidemic deniers” be fired, as though any of them could have done anything:

Against such ignorance, the gods themselves strive in vain, as they say.

Now I just wonder if in 2016, I’ll have to do another post entitled Autism prevalence: Now estimated to be one in [insert next CDC report’s number here], and the antivaccine movement goes wild.

If it’s not the thimerosal, it’s the adjuvants, and if it’s not the adjuvants, it’s the other preservatives, or if it’s not the other preservatives, it’s the antibiotics, and if it’s none of those, it’s probably residual DNA damage from the vaccine, or the parents’ vaccinations, and/or the grandparents’ vaccinations.

What is most interesting to me is that the anti-vaxers really cannot get their heads around the fact that most of these children diagnosed with ASD are mildly afflicted. They have the firmly entrenched idea that all kids with ASD are non-verbal, entercolitis-prone poop smearing flight risks. Of course that’s not even close to true. They hope to win the public over to their side with all the pearl clutching over the prevalence rates. But the public can see with their own eyes that the majority of kids with ASD are mildly afflicted.

That is also why Anne Dachel regularly heaps scorn on articles reporting the positive side of ASD. It conflicts with her entrenched world view.

I have one question. Taking the Korean study, it seems that many of these kids were found in school, undiagnosed and untreated. Were they functioning at an appropriate level? If they were, why are we labeling them as having a disease?

Am I off base here, or are we moving in a direction that may have unintended consequences?

I remember as a psychology undergrad taking a class that discussed different mental pathologies and how they overlap with neurological and other physical ailments. One of the surprising facts was that a fairly large chunk of people diagnosed at an early age with autism will go on to have their diagnosis changed later in life – often as a teen or in early adulthood. Part of the problem is that there are incredibly scant diagnostic criteria for the diagnosis of mental pathologies in small children, so those diseases are often not considered outright. There are also other conditions that may also be misdiagnosed as well (like 22q, a genetic disease that looks eerily similar to autism, but is completely unrelated to it). I feel for the individuals who are misdiagnosed and then have to spend the rest of their lives trying to convince (most likely) their parents that they have something else.

@Michael Finfer, MD, that was my reaction too. In the South Korea study,

two-thirds of the cases of ASD identified in the study were “in mainstream schools, unrecognized, untreated.”

If they were so close to the norm that their differences weren’t even recognized, why should they be diagnosed with anything? Why should they be “treated”? They may need a little extra help in some areas, but doesn’t almost every child, on some areas or others? Should these children just be part of the range of “normal” rather than the range of “ASD”?

@LW – do we really need to be going around & labeling the “quirky” kids? I agree that this expansion of diagnosis may be going too far – because I haven’t seen much in he way of expanded “therapies” that are designed to help these types of individuals….

I think that some anti-vaxxers see the spectrum in black and white: autism, to them, is dichotomous-an ON/OFF switch activated by vaccines- and children are either ‘perfect’ or “destroyed”. They have a problem with advocates like Mr Ne’eman because he apparently isn’t in need of either their help or instruction.

AS I’ve said many times before, anti-vaxx advocates who write for AoA or TMR may consider their roles as a secondary career, making them feel important. Notice that others are writing books, e.g.Louis Conte.

Think about what we observe at those wretched hives…I mean, those miasmic sinkholes of unreason and martyrdom: without benefit of education, training or experience, a parent can mimic a doctor, researcher, psychologist, journalist, author, legal expert, social critic, revolutionary or avenging angel.

They can preach the gospel of toxins to adoring followers and advise younger parents about medical choices on facebook or rally ardent supporters around them like so many miniature Andy Wakefields**.

The polticised rhetoric used at those slimey swamps is eerily familiar: I hear that daily at NaturalNews or at PRN- virulent stupidity bleeds from these venues and infects followers who in turn infect others.

@Lawrence, exactly. I think the range of “normal” should include “quirky” instead of every little difference being treated as an illness to be treated. I don’t think we should be regarded as sick people to be treated if we are not perfect clones of the “precisely normal person”.

I sometime wonder if there isn’t some racism working here. What I mean is: a white child that acts out is given a diagnosys of ASD (which may or not be correct). A black child that acts out is expelled (without being given anything).

I’m not aware of any major changes to the vaccine schedule in the last few years, so how do they explain the ~25% jump in prevalence between 2010 and 2012? Other than falling into the usual logic traps of “post hoc ergo propter hoc” and “the plural of anecdote is data”.

The idea that vaccines cause autism is, as I recall our host saying on other occasions, an ex-hypothesis.

So you’d have to promote understanding (and in some cases, make accommodations) for the different and diverse either way.

Still anecdotal, but fwiw, from what I can recall, the “quirky” kids definitely did not have a better time of it back in the pre-diagnostic-awareness day.

@Michael Finfer, MD —

Cultural factors make that one kind of a challenge to parse, imo. But presumably, either (a) most of them stood to benefit in some way, shape or form from treatment or assistance; or (b) there was some very broad-brushstroke diagnosing going on there.

And one of those things would have to be true no matter how good their measurable functioning was or wasn’t.

I mean, the diagnostic criteria are somewhat loose. But not so loose that they’d be likely to sweep up whole gangs and heaps of completely neuro- and behaviorally typical children just out of a sheer overabundance of caution. There would have to be another object to the exercise — ie, someone profiting, someone finding a way to get difficult-to-help children some form of assistance, etc.

I understand and am sympathetic to the fear of psychiatric overdiagnosis/overtreatment. Of course.

But in my personal experience and observation, the reverse is more usually the case. There are a lot of floridly mentally ill people wandering around out there under the impression that they’re rational, responsible citizens.

T@12: Although racism may be a factor, that’s not how it manifests. The study is looking at autism prevalence in eight-year-olds, and it’s rare to expel students that age from public schools. (Private schools would be more likely to kick out those kids, but that would tend to affect white kids more than others since white kids are more likely to attend private schools.) The difference is more likely to be in access to diagnosis and treatment; i.e., a white kid who is struggling in school is more likely to be flagged for diagnosis than a black or Hispanic kid. Whether that’s due to overt racism or differences in economic opportunities (or a combination thereof), I don’t know.

I sometime wonder if there isn’t some racism working here. What I mean is: a white child that acts out is given a diagnosys of ASD (which may or not be correct). A black child that acts out is expelled (without being given anything).

I don’t wonder. Figure of speech, though, I realize.

I think it’s actually probably worse than that. A white child that does poorly in school gets attention and assistance, a black child does not, more like.

Whether that’s due to overt racism or differences in economic opportunities (or a combination thereof), I don’t know.

With some possible regional variations and exceptions, I think overt racism is a lot less likely than institutional racism, in such a circumstance. Plus the latter encompasses economic disparity. FWIW.

@Lawrence, exactly. I think the range of “normal” should include “quirky” instead of every little difference being treated as an illness to be treated. I don’t think we should be regarded as sick people to be treated if we are not perfect clones of the “precisely normal person”.

I don’t think we should regard people on the spectrum — or, ftm, people with any kind of developmental difference — as “sick.” Nor do I think we should regard them as “quirky.”

…

What’s wrong with just regarding them as people?

I’m serious. Some people need some kinds of help, understanding and support. Other people need other kinds of help, understanding and support.

Not just vaccines and GMO’s as the cause of autism, but GMO vaccines. The horror. There seems to be increased paranoia about the use of molecular biology to design vaccines. The organic sector seems to be ready to ban all such vaacines for organic livestock.

Ah, yes, the tediousness of surveillance data collection, analysis, and interpretation. Until we have a system that can collect data 24/7 from all possible sources, these kinds of misunderstandings, vilifications, and misrepresentations will keep happening by those who want to believe in something. You see it with vaccines, with fluoride, with GMO food. “More kids have food allergies,” they say. Well, we didn’t really keep track of food allergies in the past. Little Johnny in the 50s was always at risk of encountering peanuts and having a reaction, but he was lucky. Today, we know LJ has a peanut allergy and we remove all threats around him, sometimes to excess.

I’m TA-ing a class on surveillance this term and some of the brightest minds at one of the most prestigious institutions of public health have a hard time grasping the concepts of a surveillance system. CDC and other agencies are, in my opinion, not doing a good job in explaining the details of their surveillance findings in a way that is more understandable to the public. It is then left up to bloggers (sadly, on both sides) to translate this for the people… And you now have seen where that leads to.

And then people like Dr. Offit try to do it and he gets death threats:

I don’t think we should regard people on the spectrum — or, ftm, people with any kind of developmental difference — as “sick.” Nor do I think we should regard them as “quirky.”
…
What’s wrong with just regarding them as people?

I totally agree, but we’re talking about children who were “diagnosed”, who were previously “unrecognized” and “untreated”. If you are called “untreated”, to me that implies that you require treatment, and therefore that you are sick. I don’t like those implications with regard to people who are getting along without being “treated”.

I was talking with someone on another forum about GMO vaccines. He was clearly saying that like it was a bad thing, but I responded that damn straight I like GMOs in my vaccine. The whole point of the vaccine is to not get the disease, so of COURSE I want a version of the disease modified to not actually sicken me.

As far as diagnosis of kids who aren’t lower IQ….my daughter falls into this category. She’s very smart. I doubt fifty years ago she would’ve been diagnosed with anything at all, except being slapped with labels like “weird” and “lazy” and “bad attitude”. Some people think it’s wrong to label kids like her with a diagnosis; I think it sure beats the other labels she’d get otherwise.

Dr. Jay Gordon sent a letter to all his patients’ parents, which clearly stated his opinion of MMR vaccine (he doesn’t think it is necessary), even during measles outbreaks in California. Some of those parents are astonished that Dr. Jay is anti-vaccine. Read the letter here…

One of my gentlemen worked for a large international concern: altho’ his position involved a great deal of interaction with the public and with co-workers- in which he excels- many of his associates did IT, accounting and record keeping. Of that group whom I’ve met, there appears to be a trend towards outwards perfectionism, collection hobbies and shyness or insecurity in social situations.

Most of these guys are over age 45. All of them *have* to be of above average intelligence ( to work at that firm) and I would bet real money that there isn’t a single ASD dx amongst them. One or two have decidedly odd beliefs or interests. One spent a short time in a mental facility as a teenager for “anxiety”. Quite a few (maybe half) never married.

One of the married ones has a very outgoing wife who somewhat assists him socially. Another keeps extremely meticulous data about sporting events he enjoys: he has shockingly good recall for details.
Another collects odd, mechanical products and advertising material popular in his youth.

I am the mother of 2 children. One has high functioning autism, the other ASD. I have a pharmaceutical background, and am certified to give vaccines. My children have received all their vaccinations as well. I have taken the position that if a therapy is mostly supported by testimonials, I can’t justify the expense, time, and massive effort to pursue its implementation. Our biggest improvements came after receiving speech therapy, occupational theory, and tons of support at school. I have a hard time fitting in to the autism support groups because I am not extreme enough, but I have to say that I could have done without the sarcasm and anti vaccine crowd bashing in the article. Please just present the facts in a nonjudgmental way. To suggest that hysterical parents are just looking for something or someone to blame because their kids aren’t perfect is as uninformed as you are accusing the other side of being. My children are high functioning, but I can assure you that their issues do not even come close to simply being quirky. For them to be able to function independently as adults is going to be a big stretch, but we will keep working on it. I would like to see more research on environmental factors (that is not being used as a code word for vaccines by me), without the us versus them mentality. Reasonable parents will better respond to scientific facts if they perceive that they are being taken seriously, and they can trust that corporate interests won’t be protected at the expense of their kids. And please remember what is scientific fact today does not guarantee it will remain a fact forever. Thanks for letting me express my opinion, I did find the article useful.

This is one of the clearest descriptions I’ve read of this line of research. I’m going to share it with parents and our clinicians. I’ve been following prevalence research on ASDs (and other DDs) since the early 90s. One thing was clear from that beginning point, the better the case finding the higher the prevalence tends to be. It is a simple fact when you have generally applied diagnostic procedures. One thing that has varied across time has been the tools available to clinicians for diagnosing autism. In some ways this is a story in scientific success, better tools have been more widely distributed (and supposedly better guidance will be provided with the newly suggested criteria; that is a wait and see proposition – scientific evidence will follow soon enough) and more cases are identified. And now more cases are being found in populations where case finding generally lags.

@Sweetpea, “My children are high functioning, but I can assure you that their issues do not even come close to simply being quirky.”

I was not suggesting that every child with an ASD diagnosis is merely quirky and should be left untreated. I was suggesting that if two-thirds of your diagnoses are of children who are in mainstream classes and functioning well enough that no one felt a need to diagnose or treat them, then maybe your diagnostic categories are way too broad.

@ Sweetpea: You do realize, don’t you, that many of the posters here have children diagnosed with ASDs and other developmental disorders. Some of the posters here have been diagnosed with ASDs.

I am a retired public health nurse clinician-epidemiologist and I have seen firsthand how the anti-vaccine groups and credulous parents that you defend, have labeled their children who are diagnosed with ASDs as “train wrecks” and “vaccine-damaged”.

It is an adversarial “us versus them” mentality, because you cannot reason with these crank anti-vaccine groups and their echo chambers,

“There are actually people on some of the comments sections asking why, if the vaccine schedule is approximately the same in every state, the autism rate varies somewhat.
Are these people morons? Exemptions?”

Well, it might be time to remind folks (perhaps including clinicians) that “disabling” should be a key aspect to any diagnosis. “Not of clinical significance” should be a part of the diagnostic process. Collecting thousands of vacuum cleaner parts and meticulously organizing the collection is not a disorder. Being shy is not a disorder. Being a perfectionist or preferring to have things very organized is not a disorder. But if one is unable to function in normal life, then it is. If one becomes a hoarder, if one is so shy that one cannot even get to the post office to buy stamps, if one is so perfectionist that they have a crippling inability to even attempt anything, then it’s a disorder.

And I think under the DSM V, it’s still supposed to be disabling in order to qualify for diagnosis. I humbly submit that perhaps the problem isn’t the definition. It’s overeager application of it.

As a formerly quirky kid (now a quirky adult) I find myself wondering that if so many of us are falling outside the definition of neurotypical, maybe it’s time to reconsider the definition?
FWIW, I was assessed as a child; the therapist decided that my weirdness was not of the autistic variety, and if I didn’t talk much, it was (as the Finnish joke goes) because I didn’t have much to say. After that we had some mutually entertaining sessions with Piagetian activities and spatial-thinking tests while he studied how my mind behaved.
The date must have been about 1967 because when I go back into memories there’s a copy of Piaget / Inhelder “Child’s Conception of Space” on the bookshelf.

I humbly submit that perhaps the problem isn’t the definition. It’s overeager application of it.

This is very likely true. One of the unintended consequences of the Americans with Disabilities Act is that some parents will make an effort to get their kids diagnosed as having some special need (learning disability is the most common), because the school district is then required to provide the extra resources the child needs to get an appropriate education. I don’t have hard data on how many parents are simply gaming the system (as opposed to having an extra incentive to get their kid diagnosed), and I don’t know whether ASD diagnoses are part of this, but the incentives are there. And it’s one of the factors that have contributed to K-12 education costs rising faster than inflation, because providing those resources costs money (a typical pupil will cost on the order of $10k per year; a special needs kid will be substantially more expensive, and if an out-of-district placement is needed, the cost can exceed $100k per year).

This incentive to be diagnosed may contribute to the observed racial disparity in diagnosis rates. With learning disability diagnoses, the parents who have been pushing the most tend to be white suburbanites. I don’t see any reason why it would be different for ASD diagnoses.

Regarding the differences between the below-average states where only health records were used and the above-average states where educational records were also used, we need to remember that the criteria for educational assessment of autism (i.e. eligibility for special education services under the “autism” service category) differ from state to state and in many cases are more permissive than the criteria for medical diagnosis of autism. Once you include educational records in the mix, you’re no longer using a uniform nationwide standard for determining who gets identified for the first phase of the survey.

John Elder Robison (http://www.johnrobison.com/about-john.php) points out that if as a child you refuse to try new foods at a restaurant you’re labeled ” picky”, while the same behavior in an adult gets you labeled as a regular.

The date must have been about 1967 because when I go back into memories there’s a copy of Piaget / Inhelder “Child’s Conception of Space” on the bookshelf.

My grad school advisor was fond of remarking that the purported failure of conservation of quantity fell apart if the actual amounts of candy differed and the question was changed to “which one do you want?”

Notice that I know the guys described above because they are *friends* of someone who worked at the same place.They have friends, good educations, careers and several are married. Some have children.

I think that the dx could be *pushed* for most of them either if they were teenaged today (and similar to how they are as adults) OR if they so chose to view themselves as having AS. Only one, AFAIK, may have an additional problem: most likely a personality disorder on the side.

AND dare I say it? Perhaps their differences from the mean are socially valuable in that they have been utilised by their employer and have enabled them to earn better than average pay. That doesn’t sound like a disability. *IF* they are not suffering.( see careers in STEM occupations)

at 23 minutes in she starts to discuss the impact of socioeconomic status (SES) and race and the implications of this on autism diagnosis.

I also found it interesting that a recent study in Sweden did not see a trend between SES and autism diagnosis prevalence, indicating that the more universal accessibility to health technologies related to diagnosing autism may account for that not showing up. Whereas, that universality does not exist in the USA and may help explain the disparities across socioeconomic groups.

However, she also says that if anything, as the playing field evens out (if it ever does) and these technologies become more universally available in the US that we will continue to see the prevalence rise.

I totally agree, but we’re talking about children who were “diagnosed”, who were previously “unrecognized” and “untreated”. If you are called “untreated”, to me that implies that you require treatment, and therefore that you are sick. I don’t like those implications with regard to people who are getting along without being “treated”.

That’s a very fair and eminently sensible point.

It’s a somewhat thorny issue, though, just inherently. Because the anti-vaccine movement is a useful proxy/ally for some equally unbalanced fanatics whose true cause is anti-psychiatry.

And although there’s plenty of room for just criticism of not only psychiatry, but also of psychiatric over- and underdiagnosis both, they poison the well by fearmongering the hell out of the first two baselessly, while ignoring the third.

I don’t know. People with psychiatric disorders are a very vulnerable patient population. And their interests are rarely at the top of anyone’s list of important considerations. So I guess that in the abstract — ie, absent clear evidence one way or the other — I’d rather err on the side of excess when it comes to treatment availability than I would assume that there’s a plague of overtreatment.

That’s just on principle. But in this case. it’s (very) lightly supported by there being very little general danger of psychiatric overtreatment occurring in any form other than overmedication, atm. For strictly dollars-and-cents reasons.

AND dare I say it? Perhaps their differences from the mean are socially valuable in that they have been utilised by their employer and have enabled them to earn better than average pay. That doesn’t sound like a disability. *IF* they are not suffering.( see careers in STEM occupations)

There’s absolutely no way that I can think of to move this proposition from the realm of speculation to that of demonstrable fact. But fwiw:

My guess would be that it’s the same story for more mental disorders than one might assume. If you’re a white person who’s functional enough to be self-supporting — or at least not in need of public assistance — and you don’t seek treatment, it’s not like anybody’s going to chase you down with a butterfly net.

Social and/or occupational impairment are among the real criteria for psychiatric diagnosis. And most people prefer not to advertise either of those things, when concealment is possible.

I mean hard-wired neuro-type disorders that are incapacitating for some, I guess I should say. Even schizophrenics who get diagnosed don’t always look or act very stereotypically “crazy.” Sometimes they just come across as quirky. Likewise some forms of OCD.

Well, thank you, kind sir.
The only things I am ever likely to dive into are a luxurious, Hockney-esque swimming pool and a Tanqueray and tonic-and those would be literally and figuratively, respectively.

Some may find our depiction of anti-vax proselytisers harsh
but imagine their achievements which include:

-scaring young parents about vaccines
-exposing children to VPDs needlessly
-giving medical advice without apropo education et al
-treating children with dangerous or useless procedures
-forcing children to subsist on bizarre diets /supplements
-ridiculing and harasssing professionals who are SB.
-spreading mis-information about health
-encouraging mistrust of the government and experts

Dangerous nonsense like that needs to be described in whatever terms it takes to get the message across.

You know, it is not just parents gaming the system that leads to misdiagnosis. As an anecdote my son went to a school for K-2 grade that had 1 teacher and 1 assistant to 30 students. This was in a nice suburb but there were just so many kids in the area, this was also in the late 90s. Anyway, they pushed ADHD diagnosis like you wouldn’t believe. They thought everyone had a problem. My son did have a problem and they so pushed the diagnosis that my doctor prescribed medicine for him, two different ones that both put him in the hospital. Anyway, after that his doctor sent him to a behavioral institute for all kinds of tests and they said he did not have ADHD, but a learning disability where he took in information faster than he could process it. That is why he was good at math and bad at reading. Anyway, things got better after that because they knew what to do with him and then he switched schools to one with 1 teach per 11 students. That also helped a lot.

That meme was terrible. Forget about being dumb, it’s like whoever made it didn’t even know what a meme is. Hint: If you’re basically just writing a short essay that isn’t particularly clever or witty…it ain’t a meme.

As to this:
“-forcing children to subsist on bizarre diets /supplements”.
My son (PDD-NOS) is now in High School. Many of his SPED friends are now on a gluten-free diet. He asked me about it, after doing his own research on the magic internet. He also arrived at the conclusion that the way he is is just the way he is, he can learn ways to deal with it. He does not have to give up pizza. And no, this is not one of those high functioning kids. He’s verbal, but has a tenuous grasp on reality and a tested IQ of about 70, though obviously he just tests poorly, and can totally grasp the importance of being able to eat pizza.

That sounds like the reality I’m familiar with, for sure. I’m glad it worked out and horrified/outraged that it was so traumatic before it did.

I don’t think almost any of it is anybody gaming anything.
The system itself is inadequate. And that’s not a trivial concern. But it’s not a simple one, either. Whether overtreated or overlooked, children suffer serious consequences as a result. Sometimes grave consequences, even.

Sometimes it works, too. I’m not saying otherwise. But there’s room for improvement.

Look at the turquoise AoA propaganda poster with the disgusted-looking doctor. Read carefully….

‘How on Earth could they have _miss_ so many autism cases?’ That should be _missed_. Don’t tell AoA;-)

Re. IQ > 85 as ‘average or above average range of intellectual ability…’ Last I checked, 90 – 110 was considered ‘average.’ If 86 is the new ‘average,’ then 101 must be the new ‘gifted,’ and anyone who can write a whole paragraph of coherent text is a certifiable genius.

Lastly, something in the news a week or so ago, to the effect that prenatal brain development abnormalities have been detected that correlate highly with childhood ASD diagnoses.

If that’s true, it puts the lie to the whole anti-vaxx meme. They’ll have to keep digging (‘have a nice JCB: keep going and you’ll get to China!’). Perhaps that’s where the item comes in about the jabs the mums got when they were children, or perhaps the dads, or the grandparents. ‘Somewhere, somebody in this child’s ancestry got a vaccine!’

I’ve been busy posting on the Forbes blog and reading the unintentionally humorous posts at AoA.

From Dan Olmsted about Dr. Paul Offit’s presentation:

“Paul Offit’s Peeps

Get this, from Forbes: Offit tells reporters to “avoid the ‘he-said, she-said reporting’ that perpetuates false controversies in science and medicine”. Offit was keynoter at annual meeting of the Association for Health Care Journalists. If I belonged, I’d quit!”

As if…Danny Boy would ever be eligible to join the Association for Health Care Journalists.

The goals of the ADDM are:
1. To obtain as complete a count as possible of the number of children with ASD in multiple surveillance areas.

So let’s see if I’ve got this right: A group of researchers tried, harder than anyone has tried in the past, to count *all* the children with ASD within areas of interest. Consequently, they found more than less assiduous researchers. Well slather me with peanut butter and throw me to the labradors.*

As a parent who has to “game the system” on behalf of my autistic son, I have slightly less pejorative way of looking at the parents’ roles in diagnostic differences in different communities. I live in suburbia in a great school district in a state with an autism waiver for Medicaid in a city with good medical research hospitals. I had my son diagnosed at age 3. Why? Because it meant I could afford speech therapy (paid by Medicaid after hitting the cap of 10 sessions/year in our primary insurance), behavioral and social therapy (paid by Medicaid), and a private preschool for autism (also paid through Medicaid). If not for the combination of the Medicaid AND the available services in my city, I would probably have waited longer to have him diagnosed. If my large school district did not have an autism-support program that was separate from the special ed classrooms, I may not have had a formal diagnosis done even then. It’s not that suburban parents are clamoring to get their special snowflakes into special ed for the extra attention. It’s that the suburban parents at least have school resources to shoot for to make the tedious and unending diagnosis and qualification process worthwhile. It would be interesting to compare diagnosis rates in states with and without the Medicaid waver.

I, a suburban mom with resources, strongly suspect that my son also has PANDAS — the OCD flare-ups associated with strep. So does his regular, board-certified pediatrician. It would be possible to definitively confirm or rule out this diagnosis with a series of blood tests, but I haven’t gone through with the testing. Why? Because knowing for sure wouldn’t change his available treatment options. If a medical treatment were to develop, I’d definitely pursue the testing. I think you see the same, (dare I say ‘rational’), decision making process going on in communities with low access to autism therapy resources — probably the gist of the IMFAR talk referenced above.

“Turning our backs on this development as a society at the directive of bad science is a terrible betrayal of all the hard work that’s gone into the development of vaccines, and it’s also a terrible betrayal of the autistic community.

Are we so repulsive that you’d rather die, or kill people, than be autistic?”

I’m not sure about Autism vaccine etc. I think there are probably loads of autistic kids that never had a vaccine. But speaking from experience there are a serious large amount of crazy kids in school these days, autistic mental issues you name it.
Adults too. Whatever the cause I wouldn’t be surprised if the fall of the the western world isn’t from war or famine or disease. Just from mental illnesses.
Although I chose not to vaccinate my kids (All are healthy living and never contracted a disease stronger then a cold or flu). They were also rarely home from school for an illness. I still don’t believe vaccines are the soul cause for all autism. Either way people should have choices, no different then anything in life. Abortions, drinking, religion politics. A society that forces its citizens to follow rules to bring conformity, isnt much of a society now is it.

Either way people should have choices, no different then anything in life.

I take it you have no problem with the consequences then, such as not having having your individual choice override the choices of public schools and private employers to tell you to go elsewhere. No different then anything in life, as you say.

Except there should be consequences when your choice has an adverse impact on my health and well-being.

Your choice to drive drunk is a choice you made about the safety of everyone else unfortunate to be on the road with your drunken self.

Your choice to refuse to vaccinate your children against disease is a choice you made about the freedom from disease for everyone else who cannot, because of age or medical condition, is at risk from that disease.

cc: “Although I chose not to vaccinate my kids (All are healthy living and never contracted a disease stronger then a cold or flu).”

Please be sure to thank all of your neighbors who vaccinate for protecting your kids. By being responsible parents and willing to risk the teeny tiny risk of vaccination to avoid the very large risk of disease, they are also keeping the diseases away from your family.

You, on the other hand, are being a parasite on your community. That is not something to be proud of.

A society that forces its citizens to follow rules to bring conformity, isn[‘]t much of a society now is it?

Except societies the world over do enforce rules. All societies involve people living and working together. Rules are not composed to force conformity, they are composed to ensure that people don’t hurt each other. Noise ordinances, mandatory taxation and vaccination requirements for school are just three examples.

Our “friends” over at AoA have another hit piece up railing against Dorit, a supposedly open letter to her employers trying to point of various COIs (or just complaining that someone would stand up and point out the obvious benefits of vaccines)…..again, Anne Dachel & her flying monkey squad see no issues with their spamming of any and all vaccine or autism-related articles, but god forbid someone stand up to them or point out their constant errors in fact, logic, and evidence.

That “conflict of interest” is sheer unabated professional jealousy because Dorit has the respect of the science community and the autism community.

Don’t forget the legal community. SIU Carbondale only moved into the top 144 of U.S. News’ law schools (thus meriting a ranking at all… of #140, in a four-way tie) when the system was rejiggered in 2013. They fell back out in 2014.

The letter is to the editor of a journal that has accepted an article Dorit wrote, which will be published later (this month? I am not sure). Waldeman is having a hissy fit at AoA because the journal editor wouldn’t publish Waldeman’s letter in the same issue.